awaiting second surgery

[robby]

well I haven't been here in awhile and many changes have taken place here. wow. To update quickly, I had or have a solitary fibrous tumor at c1-c3. My first surgery was June 2007 with Dr. Jallo he was able to get about 40% of it. He wants to wait about a year to heal some before going back in, which would be this summer. I did request to try to wait to fall because my kids will be in school and I won't have to worry about a sitter. At the time I was feeling pretty good but now I am having quite a bit of pain and stiffness. I am hoping to make it to fall. Now the reason I am here. I haven't been around because I kinda thought if I ignored it, it would go away. Well, it didn't work. Also I need to go someplace at times where people understand. My family is supportive but some days I am so uncomfortable and their response is "you look good" . I just want to scream. I am also more afraid of the second surgery then I was of the first. Is this common? Well I could go on with my self pity but I won't. Thanks for listening. Just having a real bad two weeks.

[qhcrazy]

Robby: yes, we can all relate to the phrase "you look good". I know, it DOES make you want to scream, but people have no idea about the sensations and such we deal with on a minutely basis!!! But, some words of encouragement for you...I know of a man that had a second surgery for an ependymoma and he said after the surgery he thought he was about 3 months ahead of where he was after the first surgery. I guess it all depends on the surgeon, the condition you are in now, and of course, our best friend, "time"! Good luck with your surgery and know that we are all praying for you.

[chickiet]

Hi Robby,

Welcome back! I've found this place a great source of information, comfort, and of course a great place to just vent!!

Equal to those who have the "you look good" comment are those who don't bother to ask how you are and just assume you're fine (because of course you look good)... or those expecting you to be feeling so much better because it's been a month... or those who offer their "cures" for when their feet or back hurt (of course for other reasons)...

But do remember that they (mostly) mean well and probably just feel like they've got to say something.

I had two surgeries. My story is a bit different, as the first surgery had to be aborted before they got to my tumor. They were inside my spinal cord and progressing to the tumor site when my evoked potentials tanked. They tried various things to get them to improve and when they didn't they decided they had to abort (for fear of permanent paralysis).

That first surgery was last September, and I had the second surgery in November, just 2 months later. We (docs and me) decided to give my body a little chance to recover before going back in (they realized that they were less than 1 mm from the tumor when they had to stop the first time - and felt they had a good path to it now).

Anyway, surgery #2 was successful, and my tumor (intramedullary ependymoma at C6) was 100% resected. My deficits increased after the second surgery, but I am relieved that the tumor is gone (although I still have a couple of syrinxes hanging around in there).

I think I was less apprehensive before the second surgery - I'm not really sure why, because I already had some deficits and was obviously more aware of the potential outcomes. Or maybe it was just a different kind of apprehension...

The biggest difference I see between our situations is the length of time you've had to think about things. For me they were so close that I don't think I had time for anything to really sink in or for me to think of other things to be concerned about.

Best of luck to you, and please keep us posted!!

Chris

[Linda51]

Hi Robby,

I had two surgeries in 1994 just 2 months apart here is my story. From the MRI my NS & Neurologist couldn't tell if the tumor was in the spinal cord or wrapped around it or both so my first surgery was explortory to see how it really was and to get a bioposy. I had surgery at Shands by a wonderful caring NS Dr. Richard G Fessler who was one of the top 10 NS of the world. When he got in there it was inside the spinal cord and wrapped around it and very difficult to get out since it was so big C2-T2. They were able to do a frozen section at Shands and it show a high grade astrocytoma so that was a no no and they stop the surgery. A week later they had the results from another place and it was a low grade ependymoma better news. I already had deficits before surgery and afterwards even more. Dr. Fessler came into my room on Monday morning and started talking to me about another surgery which I was against. He told me my first surgery wouldn't do me any good and the only way to get better was have another surgery. I was scare to think of going through another surgery and this time he would need to do a fusion because the tumor had been there so long it had eroded a bone in my neck so they needed to take it out and get another bone from a bank donor and do this surgery in the front. I gave in and was scare and went for another surgery. I had one month of therapy as out patient for rehab and then it was time to face the evil tumor again expecting to have this operation in the front and to get a bone from a bank donor. But it just happen to be Dr. Fessler talk to his colleague about my case and they thought it was best to go back in the same scar and Dr. Fessler listen to my mom about getting my own bone from my body so it was actually better news for me. I had my surgery 10 1/2 hours and woked up to a different situation than my first surgery. Just as I was waking up I went into a body shocked so I knew I could move they were taking the breathing tube out of my mouth and I over heard Dr. Steck telling someone my blood pressure got real low during surgery. I had no bad deficits the second time the only thing my second surgery cause I couldn't feel hot tempature on my left side but could feel cold water. It was easier to get up and down out of the bed but still slowly and need help. There was a few pieces of tumor left because it wasn't safe to get it out. Six months later I went through 33 radiation treatments to try to kill the remaining tumor but even with that it still there but no worse which I am thankful for. It will be 14 years this July since my first surgery and the medical world has gotten better.

With a good surgeon like Dr. Jallo by your side and with faith and prayers you will be okay and keep thinking good thoughts.

~Linda

[Joel]

I too, had 2 surgeries, but about 8 years apart! Jallo did my 2nd, and got everything. I would listen closely to him and try do follow his advice about when to have the next one. I think worrying about the kids is probably something you should not do. If you and Jallo think it's time, then I'd find a way to get around the babysitting issue. My deficits were a lot worse after surgery #2, and I wish I had not waited so long.
Joel

[robby]

thank you for your responses. It helps. I know deep down all will be good and I pray daily. So whatever God has planned for me I know I will be able to handle it when and if the time comes.
Thanks again

[8338]

Robby,
I, to, had two surgeries because my first surgery was done back here in my hometown and the surgeon couldn't get anything out. I then went to Dr. Jallo for my second, which was two months later. He got out 98% and, hopefully, it will never come back. I didn't have enough time to get anxious, because I was in total shock. Never heard or met anyone with this sort of thing. Deficits- after each surgery they were the same.

I agree about leaving for awhile because you just don't want to talk about it anymore. But when your body just can't get around or your hurting you have to come here because no one can give you an answer or can relate to you. Glad for having you here.
Barb